A very painful problem

When you are looking at a particular problem behaviour in a child (student), the big question is, “Is it really a problem?” “Problem” does not mean it’s unusual, or that some people are uncomfortable because it’s a “stereotypical autistic thing”. “Problem” means someone is getting hurt, or in danger, or poses a considerable social issue. Rocking is not a problem, head-banging is. Lining toys up is not a problem, biting people is.

A great many of people’s responses can be categorised as trying to get something or to get away from something. If you’re trying to get rid of a problem behaviour, then you need to figure out what’s going on. If you can figure out what the stressor is, then you can avoid or reduce it. If you can figure out what the behaviour provides to the person, then you can figure out a more suitable replacement behavior that will provide a benefit, without the problematic issues also associated with it.

Let’s say you have a student (client, child) who is hurting themself. What is our goal here? The proximate (immediate) goal is for the child to stop the self-injurious behaviour (SIB). The ultimate (long-term) goal is for the child to find a better way of fulfilling whatever need they have that is causing the behaviour. Of course, we need to identify what it is that the child is trying to get or to avoid by doing the SIB. Obviously the child needs better coping skills. But as part of that skills teaching, we must also figure out what it is that the child is reacting to, and what need the SIB fulfills, no matter how badly that need is addressed. In other words, we have to figure out the function of that behaviour.

This is important for several reasons. The major reason is that unless we can figure out why the problem exists, we don’t have a reasonable hope of truly solving it. Sometimes one dangerous behaviour gets eliminated, only to be replaced by a different, but equally dangerous behaviour. Another reason is that these harmful responses communicate to us that there is something seriously wrong going on in the child’s life, possibly (if not probably) several somethings. It’s imperative that we figure out what those are, so we can address them. Although SIBs are indeed very important behavioural concerns, they can be symptoms of other problems, not the main problems themselves.

We also need to remember that SIBs, like other big problems sometimes seen in students with autism or other developmental disabilities, are not really “caused” by autism or bipolar disorder or mental retardation (cognitive disabilities) et cetera. Very few autistic children have SIBs, and not all children who injury themselves are autistic. Of course, it’s also important to rule out reactions to organic problems such as ear infections, seizures, or whatnot.

The reason we do all this is because it is bad to hurt yourself.

We don’t want our children hurt. We don’t want them hurting themselves, or other people. We don’t want them to believe that hurting themselves (or others) is a good way of dealing with stresses. We want them to be able to learn to identify when they are stressed, and to learn different, effective, safe ways of dealing with those stresses.

Given all that, I truly cannot find any rational justification for the use of painful aversives as a means of training individuals to not harm themselves, or anyone else. If hurting yourself is bad, and hurting others is bad, how is it then okay to use intensely painful aversives on someone? Repeatedly, hundreds of times, under inescapable circumstances, for weeks and months on end?

Certainly, zapping someone with unavoidable, painful electrical stings on bare skin will stop them in their tracks. It stops the self-injury by that default. Punishment will stop people from doing something, at least while the threat of punishment still exists.

But it doesn’t help us figure out why the person was hurting themself. It doesn’t teach them how to identify when they are stressed, and to learn different, effective, safe ways of dealing with those stresses. There are students who have been incarcerated at the Judge Rotenberg Center for years past their legal majority. That system does not provide them much in the way of tools to live successfully outside of the institutional environment. All the students are given their educational content by way of sitting through computerized programs, and regardless of their problems, are taken off all psychiatric medications. They live at the center full time, and about half of them spend their waking hours wearing battery backpacks and electrodes of the GED device, so they may be shocked at a moment’s notice, for any immediate or past infringement of the rules. One hates to even contemplate how this kind of approach further traumatises a child who suffered from Post-Traumatic Stress Disorder even before they got there. So far, six children have died while attending this institution.

Some supporters of the JRC will assert that using the GED is the only way to stop these disturbed children from hurting themselves, as the methods at their previous placements didn’t work. But this is a false dilemma — it’s not a question of “painful electric shocks or nothing”. And while it’s true that a few students are over-medicated, and that some people do react badly to some medications, this is not the same thing as saying that no one should ever use psychiatric medications.

If hurting yourself is bad, and hurting others is bad, how is it then okay to use intensely painful aversives on someone? We don’t even use things like this in prisons. Why is it deemed “okay” by school districts and courts for children with learning disabilities and emotional problems to be subjected to this kind of treatment?

People who injure themselves have a very painful set of problems. But we as a society have an even greater problem. Allowing such treatment to happen and continue is unconscionable.

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A great many of people’s responses can be categorised as trying to get something or to get away from something. If you’re trying to get rid of a problem behaviour, then you need to figure out what’s going on. If you can figure out what the stressor is, then you can avoid or reduce it. If you can figure out what the behaviour provides to the person, then you can figure out a more suitable replacement behavior that will provide a benefit, without the problematic issues also associated with it.

I really like that simple approach… for quick analysis of a problem behaviour more generally by trying to find out (/ guess):

Ana54 said,

JRC staff are hypocrites/ To answer someone’s question, if Matt Israel had his way. prisoners WOULD be being shocked too. He even invites staff to have another staff member use the GED on them to “help” them quit smoking. But I agree that if a regular prisoner is given a more humane treatment, especially, why do this crap to innocent children? When I read their FAQ they justified it by saying that if they weren’t disabled and knew better they would not be using that crap on them. Sick, sick, sick.

Patrick said,

There is a blog post somewhere that evaluates the effectiveness of disability simulations like you mention, and it wasn’t very positive about how usefull they are. Sorry I have no idea what blog it was on, but please try to think how inappropriate that may be perceived, as there is NO WAY for them to show things like the oppression of the disabled that happens on a continuous basis day in and day out.

Sheri McMahon said,

I suggested to my district’s FEET (family educator enhancement team) that as the special project for the year they find ways to provide disability awareness education to the schools and community; I was thinking of something around Dec 2 as the anniversary date of the first signing of what is now known as IDEA. People were receptive, mostly thought in terms of stuff like simulating disability (vaseline on eyeglasses, that sort of thing). Probably not likely anything cutting edge would occur but wonder if you have some suggestions. Somehow nobody ever quite grasps what I am trying to say to them.

Patrick said,

Thanks for putting these ideas out so eloquently Andrea. I’m sure that many others could use the enlightenment to lighten up on useless or mainly useless aversives, and might try to see what is the cause behind the behavior.

Like the above respondent, my SI behaviors are not as intense as they were as a child, and as you pointed out, its likely because others (or myself) have helped to develop better ways of handling the stressors. And in my case, a good course of antidepressants too.

I’d like to point out that many NT children deal with self-injury during their teen years, usually as a response to depression. The depression can be mild, but when combined with the upheaval of the teen years and the hormonal upsets, it can be enough to push a teen to use self-injury as a calming mechanism. This type of problem is called “superficial self-injury”, or colloquially, “cutting”. (The actual injuries themselves are often cuts, but can be burns, bruises, bites, etc.) For the most part, these teens learn other coping mechanisms by the age of 20-30; but some will have life-long SI habits. Statistically, 1 in 8 people has injured himself; 1 in 10 of these does so habitually. Many people who injure themselves cannot be given a psychiatric diagnosis; most of the rest are diagnosed with depression, dissociative disorder, PTSD, or borderline personality.

I don’t remember the first time I hurt myself deliberately; but I know it happened during early childhood. I was never a head-banger; I tended to squeeze hard, sharp toys like Legos in my fist, or bite myself, or smack myself with something. The function of these behaviors was always to calm myself, or to focus myself. When the world seems overwhelming–either in a sensory way or because of unpredictable, overwhelming situations–the use of self-injury is a way to focus the mind sharply, at a single point, rather than having your mind completely overwhelmed with everything else.

Self-injury solves the problem of overload because of the way the brain reacts to physical injury–by immediately focusing all of the attention onto that injury and away from everything else. That means that it can snap you out of overload, at least temporarily.

Thankfully, my SIBs these days are minor. I no longer cut myself; the most I do these days is biting and hair-pulling, neither one enough to cause permanent damage. I began to solve that problem when I was first diagnosed with autism–because now I had the tools to understand why I felt overwhelmed, and could begin to find other ways to deal with it. For the most part, self-injury was replaced by rocking, staring intently at a beautiful object, or withdrawing somewhere by myself.

Still, the problem’s not entirely solved–I have GOT to teach myself not to pull out my eyelashes. They have the function of keeping dust out of one’s eyes, and not having them can be quite annoying.

This is why I don’t spank (and don’t get the point of other aversives). It doesn’t make sense to me. Of course my kids don’t have disabilities, they just need a good whippin’ according to my parents and in-laws, so you can figure we are hardly the poster family of “see not spanking works too!”

WAGGLE DANCE!

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